A pilot study of an exercise-based patient education program in people with multiple sclerosis.

Abstract

There
is increasing evidence that physical exercise leads to numerous
positive effects in PwMS. However, long-term effects of exercise may
only be achievable if training is implemented in daily routine. Enabling
patients to exercise regularly, we developed a patient education
program focused on evidence-based information of training. PwMS were
educated in neurophysiological effects of physical exercise,
exercise-induced benefits for PwMS, and risk factors (e.g., weather).
Fifteen PwMS were analyzed before (T 0) and after (T 1) a 12-week
patient education. Afterwards, participants performed their exercises
autonomously for 32 weeks and were tested in sustainability tests (T 2).
Guided interviews were carried out, additionally. Significant
improvements from T 0 to T 1 were found in 6MWT, gait velocity, TUG,
fatigue, and quality of life. Significant results of TUG and gait
velocity from T 1 to T 2 demonstrated that participants kept few effects
after the 32-week training phase. Qualitative analyses showed improved
self-confidence and identified training strategies and barriers. This
pilot study provides evidence that PwMS are able to acquire good
knowledge about physical exercise and apply this knowledge successfully
in training management. One might conclude that this exercise-based
patient education seems to be a feasible option to maintain or improve
patients' integral constitution concerning physical and mental health.

Phase I: an instructed training phase (six weeks) and
an assistive training phase (six weeks). The first 6 weeks was essentially the theory and then practical education program covering coordination/balance
(e.g., highly reflex-based movements, balance training, active games),
endurance (e.g., dancing, aerobics, walking on different surfaces like
in the forest or at sand), and strength training (e.g.,
device-independent body weight training, elastic band). Phase II: after the 12-week patient education program, participants did the exercises on their own for 32 weeks.

People participating were scored before the intervention (T0), straight after the intervention (T1), and after 32 weeks of self-regulated training (T2). Those who participated: 3 men, 12 women; average age=48; average time since diagnosis=11years; sub-type=8 RRMS (relapsing), 4 SPMS (secondary progressive), 3 PPMS (primary progressive); average EDSS = 4 (able to walk without aid/rest for 500m).

And the results are:

Outcome measure

T0 baseline

T1

T2

T0–T1 (α) P value

T0–T1 effect size d

T1–T2
(β)P value

T0–T2 (α) P value

T0–T2 effect size d

TUG [s]

9.8 ± 2.7

7.5 ± 2.3

8.1 ± 1.9

<0.001

3.38

<0.05

<0.001

2.6

6MWT [m]

419.2 ± 126.3

483.7 ± 140.2

432.9 ± 123.3

<0.001

−3.3

ns

ns

−0.73

Treadmill [min]

12.1 ± 5.5

15 ± 5

14.6 ± 5.5

<0.001

−1.91

<0.01

<0.05

−1.12

Treadmill [km/h]

3.5 ± 0.8

4 ± 0.7

4 ± 0.9

<0.001

−2.39

<0.001

<0.05

−1.23

Fatigue [score]

5 ± 1.6

4.5 ± 1.7

4.7 ± 1.5

<0.05

0.86

ns

ns

0.14

SSA [score]

4.9 ± 1.4

5.4 ± 0.8

5.2 ± 0.7

ns

−0.6

—

ns

−0.5

SF-36 [score]

General health

58.9 ± 18.6

66.7 ± 18.1

61.3 ± 19.6

<0.01

−1.49

ns

ns

−0.15

Physical functioning

51.7 ± 19.3

56.3 ± 25.7

51.9 ± 25

ns

−0.57

—

ns

0.15

Vitality

44.3 ± 19.6

55 ± 18.6

52.7 ± 16.2

<0.001

−2

ns

=0.05

−0.91

Mental health

73.3 ± 13.2

77.3 ± 14.6

73.5 ± 13.1

<0.05

−0.97

ns

ns

0.22

Most of us find regular exercise a difficult task outside of having a personal trainer. But what these results show is that persistence and dedication pays - check out the highlighted significant outcomes in treadmill scores after 32 weeks of training alone compared to pre-training) and it also improves vitality.

11 comments:

Nice paper Neuro Doc :-). Starting exercise program may be difficult, but exercise certainly is addicitve once you see the benefits. The trick is to persevere long enough to actually see the benefits :-).( Speaking from experince here, I have tried many times in the past until I succeeded and got hooked).I swear cardio exercise at the right intensity improves not only muscle strength and endurance, but also mood and cognition.

We live in a society that wants quick fixes for everything in life. This blog is filled with MSers that imply that they haven't got time to wait for clinical trials that fail This was a small study doesn't show the benefits of long term exercise on delaying SPMS. I have always exercised before and after diagnosis. As the disease progressed I changed the type of exercises I did..I'm not a superwoman and would never ever have run the marathon even if I didn't have MS. The secret to exercising with MS is to find something that you enjoy and do it regularly, then when that becomes too difficult find another physical activity. It does work and when the comorbidities come along you are fit enough to fight them.

Totally agree with these comments. When I was dxd eleven years ago,I found a neuro physio who dinned into me how vital exercise is and actually quite frightened me. She said that with non-MS people my age, a decision to become more active could be delayed by a year or so without too many consequences. With MS, the same decision would likely rob me of my mobility. From her experience, MSers need to move all their body every day. She talks about 'muscle memory' - the fact that although a particular muscle group doesn't work well, you need to keep trying through exercises to retain function in the brain stem. Many of her exercises were based on making the non-functioning muscle groups mimic the good ones: you stretch/move the good side then apply the memory to the not-so-good bits. She convinced me that an orthopaedic procedure I could have had was unwise: in her view, the post-op months of immobility would have been so prejudicial that this would have outweighed the benefits of surgery. I carry those lessons in my head as I exercise. It's made me self- aware of what the MS is up to and I basically just keep going with as many visits to the pool a week as I can (between 4 and 6 long swims). I also find it helpful that it keeps me in the company of non-MS regular exercisers: it imprints the 'healthy lifestyle' message.

This is a hugely important study but not the only ball to pick up and run with. When a person with MS is overwhelmed with the day to day management of pain, fatigue, spasticity, and cognitive (attention) challenges (just to name a few), the very thought of exercise seems as daunting as facing Mt. Everest with nothing but a thermos of coffee...an incredible sense of failure can engulf them before they even begin. Education on understanding/recognizing heat sensitivity, hydration, reasonable expectations and support is a critical first step in achieving their exercise goals.

All participants were encouraged to find their training limits, and what the authors have termed "exercise knock-out criteria"-i.e. hot temperature, as well as any identify any negative interactions with the training (e.g. house cleaning on a training day).

It's all about organising your life. There isn't a formula that everyone can follow. We have to work out for ourselves how to slot exercise into our lives. sometimes we can be amazed at what we can do. Not every day is the same so it needs a bit of thought.

There'd be more chance of getting the exercise message across if it was considered by neuro teams to be part of the treatment regime, not an add-on or a recommendation. I agree that the thought of exercise can be daunting and depressing for MSers: perhaps it would be less so if patients were monitored on this every time they see the neuro. The above article really states what we know deep down - that drugs alone aren't enough to deal with the illness. The other message that you only seem to hear on this blog is that co-morbidities are really bad news: again, why isn't this dinned in to new patients? Sometimes patients need to hear warning messages!

I think you're missing the point here. Everyone in the population should be taking regular exercise, not wait until you become ill. Co-morbidities include heart disease, diabetes and cancer. One in three people will get cancer and just because you have MS does not make you immune. If major surgery is required, fitness is a huge consideration. We have a choice, sit in front of a PC and wait for drugs or try and do something however small that could save your life in the future. Why would you need a Neurologist to monitor you? You might find you don't need a doctor to tell you how much better you will feel.

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